Monday, November 30, 2009

This holiday weekend was a busy one. We tried to exercise E every day, mainly to get her good and tired for bed (that wasn't too successful).

I've tried different things in this hallway: here is E trying to walk the way down the hallway (she used her crutches elsewhere in the building). The video is in two parts, as she falls once during her attempt. Her speed is good (not too fast), and her confidence is pretty good too. When she falls these days, her typical response is "I'm okay". My typical response is "everybody falls"--which is true, as we've all been there.

We have so much to be thankful for this season...here are a few gems from our holiday.

At E's school, I was invited for a Thanksgiving Feast with her class. The kids sang some Thanksgiving songs for us--if I get permission, I'll post the song video, but until then, here is a pic of E from a video still--in her Turkey Hat.

I was particularly impressed with E's teacher: she did a great job of having Elena use her crutches for the "concert". This is significant, because Elena doesn't normally use her loftstrands in the classroom, but does need them for long periods of standing. Even though the other kids jump around, sing and use their hands for interactive songs, turn around--things Elena does not do--she was still "just one of the kids". Thank you Stony Point and Mary Beth, for giving E the chance to be just a kid in public school. Thanks also to her classmates, who are quickly becoming her good friends.

We went to my parents' house for Thanksgiving. E and Grandpa make a Thanksgiving Turkey decoration every year. Elena loves tools, so Grandpa makes sure she gets to use plenty during their project.

E, I am very thankful for YOU. You have taught me so many things...patience, faith, love, perseverance. You help me appreciate movement, balance, and language. Thank you for making me a better mother and teacher. Thank you for being so good to your little sister, who looks up to you more than you'll ever know. Thank you for being so STRONG, strong-willed even, and for being so open to new challenges.

Thursday, November 19, 2009

So, I'm on a couple of newsgroups. Some of them I really like. Some of them are just garbage.

I find out about a lot of different PT approaches/"alternative" therapies through these groups. One person in particular caught my attention--she is a grown woman, with spastic diplegia, who keeps an open mind concerning techniques that might facilitate her movement. I figured, here is someone who may be like a Grown Up E, who might be able to give me some insight as to what it's like to be a kid/teen/adult living with CP.

So I emailed her, and asked her if she would read this blog. And that I would appreciate any comments she had.

Overall, she was very nice. I didn't ask her to be nice, but I certainly value it. She thinks E is adorable, and that she's nicely challenged and doing very well. She also had some choice words for ME.

"You need to stop nagging" (in terms of E's posture) was her big criticism. And you know what? It burned. Ouch. Jason and I (constantly) remind E about her form to try to help her...but that comment was SPOT ON.

She's right. E tunes us out when we bark at her to "keep her feet down" or "stand up straight" or [insert voice cue here]. We praise her too, but it's drowned out by "posture nagging". I DO think voice cues are important, but obviously they aren't going to work well if she's peppered with them every three seconds by her parents. I wish someone had brought it up sooner, we didn't realize how often we do it.

We checked in with Dr. Elias for our 9 month post-op. They looked at her flexibility, strength, how she's moving around now. Everyone thought she looked great. They didn't really have her do much...she walked 5 paces to a step (a big one), which she got up on, and then onto a table. She sat on it, and she raised her right knee, and then her left knee. They asked her to raise both arms, and wring both hands. And that was it. I'm not sure what they are looking for...but if they want a good sense of how she moves...they should just check this blog.

I'm not sure if I mentioned this before, but Elena has a leg-length discrepancy. Her right leg (femur, I believe) is a little longer than her left. With her tone/weakness issues, this discrepancy is practically larger. To remedy this, Elena needs an insert in her left shoe to help equalize the functional length of her right leg. She can't wear an insert inside her shoe; the AFOs take all the room. So, we have her orthotist put the shoe lifts in-sole. That can take time...so we used her old summer sandals while her shoes were in the shop.

She did a pretty good job--kept her heels pretty low. Her gait looked a little funny, more of her feet outwards, and her knees up high...but the big deal was, it looks a whole lot better than I thought it would. Check it out:

She has been trying to walk at home in her bare feet. She used to be able to take 3 steps and fall, that was the maximum. Now she'll try to go across the room (10 steps); sometimes she can make it. On her tip tippy toes. Who knows if we can get her bare feet down.

Wednesday, November 11, 2009

Last weekend E did lots of fun things, one of which was going to our favorite playground. E brought her friend J this time.

There is a little playground (for toddlers), and a larger playground for older kids. Elena typically stays at the toddler playground--she still needs assistance for some parts of it--BUT NOT MANY!! She is supervised on steps (but rarely helped, as there are handrails) and while navigating the structure, as there are openings that she may fall through (we have not had a fall scare so far). Her biggest issues on this playground are 1) a hump she needs to go over, typically she almost falls here and has to hold on to the side wall with both hands, 2) a depression section, where almost the same things happen as the hump, and 3) when she is trying to sit down to slide--there is a handlebar above the slide, which she hangs on to, but the gap between her rear and the slide is so large she isn't able to sit down without help (she'd probably let go, and as her butt would hit the surface, her head would too). Still, she is navigating up and down the steps pretty well (some difficulty/frustration with her right leg), and climbing very well, and walking around and under the play structure without assistance!

Whew! Goin' for distance!

She also did the swings (can pump herself, but not start from a stop), and she also went on the big kid playstructure. I was helping another child--and she managed to climb up a chain ladder and into the playstructure all by herself! I'll take a picture of the ladder and post it

Sunday, November 8, 2009

Last week at PT E spent a lot of time moving around. We've adapted her new AFOs (Cascade DAFOs) and I think with one more tweak, they'll be just right. E's gait is can be described as follows: can walk toe-heel, flat-foot, occasionally heel-toe, with the majority of her weight bearing on her left leg. She will take a long stride with the left foot and a small step with the right. Her arms are usually bent, and up around her midsection, and she swings them for momentum. When she is tired, her swing is larger, and her knees and feet will turn toward the midline. We try to keep her stride SLOW and SMALL, as we are trying to foster good walking habits. She can turn around, but not pivot.

Theresa had set up stools as stepping platforms. E does NOT like this drill, b/c when she steps up or down, with her crutches or the handrail, she tries to muscle her movement through her arms instead of through her feet. Since there are no handholds with the stepstools, she wasn't excited about the task. So, she invented this new game:

There are some more PT videos on The Doodle.

Here is E trying to work on her small stride, as she was tasked to walk down the ramp solo with her crutches. Lookin' good!

Monday, November 2, 2009

On Halloween day (E wore her costume all day), E was scheduled for our first "real" stab at Feldenkrais. By that, I mean several sessions in a short span of time. Our plan was to have two sessions today (about 1 hour each), and then one two days later. It's hard to put into words (or video) the feel of the session, b/c a short clip really doesn't show much or do it justice. But, here goes...

Here are my impressions.

1. Keith is very patient. He talks very softly, and gets Elena to do things--this feat, alone, is amazing. He can command her attention by talking quietly, or not talking at all.

2. In order for E to be receptive to this gentle persuasion, it takes time. A lot of time. Meaning, the first half of the session it was basically playing with E, and getting E used to the idea of "mirroring" without telling her what to do or even that that was the goal. But by being quiet, and letting E lead part of the time, and "taking turns", it got E to be curious, and gave her some autonomy.

3. This autonomy is crucial. Keith is trying to get Elena to realize, on her own, how to move her body in a new way. For example: I spend a lot of my time barking at E to put her heels down; Keith tries to convey that having her heels up is just another way of moving--that nothing is "forbidden"--but that there are other ways of standing, sitting, moving. I think she is receptive to his message (not necessarily to mine).

Does it work? Well, that's hard to say. I'm not sure. I AM sure that we haven't wasted our time doing this, and we'll pursue it when we can. As far as real eye-opening experiences, here are the big things I noticed during our two sessions:

1. E was TIRED. She was really working hard. They did lots of transitions--all kinds of sitting, throwing balls, switching leads, standing up, balancing on balls, kicking, kneeling, etc.

2. For the first time, E had to think what she was doing with parts of her body she never thought about. For instance, she thought about what her arm NOT throwing the ball was doing (normally they move more or less the same way--both arms throw, only if one holds the ball) and got her to change it. That is DEFINITELY new.

3. When she was tired, she let him move her around. Let him touch her back, bottoms of her feet, let him move her legs around in all different motions. I don't think she would have let me do this, but she was tired, trusted Keith, and loose--her spasticity wasn't too problematic for most of the motions, probably b/c of her state of mind (or fatigue).

And, here's the kicker: we played soccer today (one day post-Feldenkrais) and I tried to get her to do a new soccer drill, where instead of just kicking the ball (or running into it, I should say) I had her put one foot on the ball, take it off, put the other foot on the ball, take it off, stand tall, and then kick (with handholds). She's never done that before. Keith spent a long time having her feet moved around, rolled on balls, foam rollers, etc. I didn't film that one: I'll film again and post

HERE.

4. On our third session, E was quicker to adapt to Keith's "lessons". This time she let him situate her face-up on a table and let him stimulate her feet and move her legs around (more of a classic starting point for older patients). He also made E a mat, with the clandestine goal of having her move different limbs independently (like a "Twister" game). He never showed her what to do, or what the goal was, but by the end of the session she was curious, and willing to identify where her arms and legs were trying to go.

E on the table

E likes Mr. Keith so much she sets up Mr. Zebra so she can treat him

E's "Twister" Mat

Overall, I am very pleased. Not just b/c I see the potential of this method, but because it is so very different from the other things we are doing. I am learning a lot, too. Keith doesn't bargain, or tease, or reward, or insist on movement styles, like I and other therapists do. Don't get me wrong--those things are valuable, and have DEFINITELY paid off. Keith has a very patient approach to movement, and he really makes E think about what she is doing. I'm not sure how much progress we will make, but I'm curious to find out, and E enjoys the time.

Sunday, November 1, 2009

Elena was a giraffe this year! I incorporated her loftstrands into the costume as her front legs.

Giraffe Front ViewGiraffe Side View

Some Halloweens have been pretty hard...especially before E was more mobile. It was hard on me to see all those kids moving around, being so cute, having such a good, easy time. But it got better.

This year, our goal was to go to at least 5 houses, with E using her crutches at every house. E had to do something, but not necessarily everything, at each house we visited--go up the driveway, up steps, down steps, across stones, etc. I pushed her in her stroller inbetween houses. She did very well, especially considering she had 2 Feldenkrais sessions, with a lot of walking downtown inbetween (she did nap before trick-or-treating).

We went trick-or-treating with some friends from down the street. That was another nice treat--this is our first year planning on going with friends. It was really nice to be included in a group.

E went to over 10 houses! She even braved some "spooky" ones, but didn't want to hang around after getting some candy. When the kids were done, we ended up going to G & R's house for a bathroom break--and ended up playing there for over an hour! E went to their basement playroom, and I tried to let her just navigate it on her own. E was AWESOME. She walked the whole room (at least 13 feet), and only fell once. The other kids were great to her. She did their indoor slide on her own. She tried to stand up from the floor on her own several times, succeeding once. She also didn't complain about her AFOs hurting! This whole experience made me think, someday SOON, she'll be able to play safely in a strange place, with other people, while I am in another room.

PS. Like her costume? If you have or know a child--especially one that has loftstrands, and they would like to have it, let me know. I'll pick from responses and send it to you. The costume is size 3T shirt (I think it runs small), and the pants are modeled after a 3T pant. FYI, E is close to 36" tall and weighs 26 lbs. I made the pants by piecing material together; the pants themselves to not have elastic, but are sewn to 2T "bloomers" inside the pants. I'd be happy to hold the costume until next year, so you can see how much your child has grown in the hopes it will fit.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.